Get Involved: Be a Part of the Cystic Fibrosis Patient Registry

The Cystic Fibrosis Foundation (CFF) is known as a global leader in their search for a cure for CF. With the relentless efforts of volunteers, advocates, families, and staff members, the Foundation continues to fund research opportunities and to promote developments pertaining to both treatment and care. Perhaps one of the most significant methods created by the CFF is the Patient Registry. Over the last 30 years, more than 45,000 individuals in the United States have contributed data to the Patient Registry.

What is the CF Patient Registry? 

Over the last 50 years, the CF Patient Registry has gathered information about individuals with CF from their visits to care centers accredited by the CFF, with their consent to share the data for research purposes. Such information includes:

• Diagnosis – Age of diagnosis, method of diagnosis, CFTR gene mutations, sweat test results
• Treatments – Antibiotics, mucus thinners, bronchodilators, airway clearance techniques, CFTR modulators, nutritional supplements, growth hormone, oxygen
• Care received – Location of care, providers seen during clinical visit, reason for hospitalization, duration of hospitalization
• Demographics – Age, gender, race, ethnicity, vital status, state of residence, employment status, marital status, smoking status, health insurance coverage
• Screening tests and measurements – Weight, height, lung function, pancreatic function, health screenings, blood tests
• Other conditions – Asthma, CF-related diabetes, sinus disease, liver disease, GERD, osteoporosis, depression, anxiety, transplant

Some of the uses of the Patient Registry are to create guidelines for CF care, to study CF treatments and their outcomes, to design CF clinical trials, as well as to guide quality improvement methods at care centers.

What is the Patient Registry Annual Data Report?

Each year, all patient data that is gathered - including diagnosis, treatments, care received, demographics, screening tests, and other conditions - goes directly into the Registry, where it is analyzed and made into an annual report that any individual can access on CFF’s website. The Patient Registry Annual Data Report provides the CF community with a yearly overview of the care received and health-related outcomes within the CFF’s network.

The highlights of the Patient Registry Annual Data Report for 2017 include the following:

• 29,887 individuals in the Patient Registry
• 282 CF care programs
• 129,542 clinical visits
• 22,535 hospitalizations

The 2017 life statistics for individuals with CF include the following:

• Employment: 51% of adults with CF have full-time or part-time jobs
• Marital status: 43% of adults with CF have reported to either being married or living together
• Education: 31% of adults with CF have a college degree

People with CF continue to live longer and healthier lives, as the life expectancy rates have gone up to 44 years old or more among individuals with CF born between the years 2013 and 2017.

Read on to learn even more about the CF Patient Registry and how it benefits both people living with CF and researchers who continue to fight for a cure.